The Chronic Illness Diary Of A Young Adult is a blog of a young adolescents life and health issues with Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Mast Cell Activation Disorder, Chronic Fatigue Syndrome, Basilar Invagination, Chiari & Chronic Pain. It covers the journey from a teenager to young adult, documenting how life drastically changes when you become chronically ill whilst aiming to help others and learn from fellow chronic illness sufferers in the process.

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Sunday, 14 September 2014

From hobbies to emptiness....

Image: Google Images

When I think about living with long term illness throughout my short life, I realise that it has often made it incredibly difficult to commit to personal hobbies, that I possibly felt a true passion for. Having since been diagnosed with many different, debilitating illnesses, it finally makes sense to me as an adult as to why I never truly fitted into the hobbies category throughout my life. The prospect of having a hobby always rattled my brain and made me feel like I was never quite good at anything. However, I allowed myself to come to terms with the fact it was my body that was the main fault in that particular equation. When someone perhaps asked me what I liked to do for fun, my mind instantly went blank because all I have ever known is pain. It felt like a foreign realm to me to do things for fun when consumed with chronic pain. Pain seems to have been the culprit that stopped me from participating in many social activities throughout the years. Because of this, I have always felt very self aware of the pain that has consumed my body from a young age.

Like I mentioned previously, I never wanted to join in with many things because my body never felt physically able enough. It was always my intuition as a child and has stuck with me throughout my young adult life. I can remember skipping in the playground and having to stop after three skips from some kind of joint popping out or some pain taking over a part of my body. I felt safer to sit and have a chat than to participate in physical activity. My world revolved around pain yet I couldn't express this to anyone because I had no clue how abnormal it really was. Quite frankly, I always felt too frightened to actually be a kid and join in with many activities. The fear was always present and never left. I would often look around me to see other kids my age excel in activities such as cross country, dance, gymnastics and find myself only being able to dream that I could be as good as them.

My pain has never let me find out what I truly enjoy or feel passionate about as a person and this became crystal clear when my life went on pause overnight during my early teens. Pain is always my concern because it really does make itself known and with that, makes me feel a vulnerability that I do not really like. I have always felt in too much physical pain to have the ability to discover exciting, new activities to try. I did however assume my passion would come later in life, possibly through some form of career. From age thirteen, I had a career in mind that I would possibly like to achieve and attended a vocational course to get on with this expertise from a fairly young age. However, there was only a few occasions that I was actually able to attend because it was quite physically strenuous on my body. I was usually sent home in tears from the pain all over my body, but I did always try my hardest and that's what I have tried to make peace with. I have since been able to accept that my previous career isn't in my future and instead hope to settle for something a little less physically strenuous on my body.

Although I never figured out my own hobbies or interests, I know that this topic may be a very hard adjustment for some with chronic illness. I have had the pleasure of talking to many people of a similar age and the one thing they all seem to have in common despite their different diagnosis', was that they all mention some type of passion towards a previous hobby. I really feel for those with chronic pain when I read this statement. They go from being incredibly gifted in their sporting fields or passions to then suddenly having to instantly stop all of these outlets of happiness. Not only is trying to accept an illness a grieving process in itself, but I can only imagine loosing these sources of happiness alongside this prospect is incredibly difficult. To loose the ability to complete activities that have been a semi permanent fixture in an individual's life can be incredibly distressing. Especially when you see everybody else your age still being able to participate, while you watch from the sidelines.

These hobbies seemed to be what people had been a part of since they were incredibly young and I can only think of the reason they were able to achieve these goals was from determination and the possibility of their muscles being kept strong over a large time period of many years. Typically before the worst or peak of their illness hit with abrupt force. Those with no insight into chronic pain or chronic illnesses will probably think, "well if they did it once surely they can build their bodies up to do it again". We would all like to think that but the majority will not. Instead we will find ways of adaption and hopefully find out the things we can become to enjoy whilst being in pain, but it will be incredibly difficult. The last thing you want to do in pain is make it worse and a lot of the time people are not in the mood for these activities, especially finding the energy to attempt new things they might enjoy.

I imagine many facing this situation may feel robbed of their talents, happiness outlet and a source of activity. I dread to think if I personally had something I really enjoyed participating in and I completely sympathise with those going through the transition. From perhaps dreaming of reaching certain goals or milestones to being confined to bed, wheelchairs and instead leading more simple lives within their homes. Whilst dreams can be put on hold and returned to in time, the waiting period is not an easy one to adjust to. It is not a simple transition at all and probably raises a lot of sadness in an indivual on multiple occasions. People are often left to deal with this sadness alone because it may not seem normal to express their upset over the loss of hobbies or an outlet they once enjoyed, once they become disabled or chronically ill. They may be forced to find other outlets of happiness by those around them as a replacement, but can it really make up for what was lost?

I use the term hobbie in a relaxed manner. This context also applies to anything that a chronically ill person once enjoyed. Such as being able to meet up with friends at their own peril, simple aspects of independence, completing simple tasks, working and even attending school. In a way, we all feel or have felt robbed of happiness when something feels like it is missing from our lives. I lose count over the amount of times I have felt frustrated over feeling confined to my bedroom because of my illness. Or analysing how difficult the simple things in life have become. For example, at twenty, I don't accept help well from my family when it comes to the simple tasks because I feel I should be capable of doing these things alone without much thought.

Being chronically ill and furthermore disabled, develops a huge loss of control in your life. So many of us feel stuck in a body that seems to be failing us in many different ways. What many of us would give to not have to think twice over the simplest of tasks. In some chronic illness cases, we eventually come to terms with knowing and accepting that our bodies will not perhaps completely heal or improve enough for us to live a busy life, with a busy schedule. There is simply too much pain in every finre of the body for us to convince ourselves it is possible that we could function and cope with a high pace life. We understand that in order to not deteriorate faster, we can attempt ways of keeping our bodies in check through different or alternative approaches. This is usually easier said than done ( for example, one session of physio has left me in bedriddem for over three weeks from a minimum amount of exercise).

Although there may be occasions where we want to do things, it does not take away our pain or the difficult of the task at hand. Everyday, no matter the level of challenge is incredibly difficult and can leave you feeling quite miserable with repercussions. The smallest task I manage can often feel like an even bigger setback, with extra pain to deal with afterwards and a long spell of becoming bed bound. Sometimes these tasks are worth it and sometimes they are not, however you figure out what is worth the extra pain as an individual. It's all well and good having people encourage you to do things for your own sanity as it is not pleasant or very fair to be confined to a house for weeks on end. I am all for those types of people, as long as they have your best interest at heart and fully understand the effort and commitment it takes to even get out the front door. Alteration of plans and lack of pressure in order to proceed with a social life is key. There needs to be a point where those who you surround yourself with can acknowledge your pain levels and how much you may be struggling and just accept that you can't manage it today. It is always up to the indivual with chronic illness to decide what they can and can not manage and whether or not they are able to push themselves over a new hobby or outlet of happiness.

I decided to list three outlets of happiness that I enjoy and hope that you can all make a mental note of yours to return to as a priority in your life, whilst you live with chronic illness. I have come to the conclusion that these outlets are important things in my life that I can continue to spend my limited energy on. These tasks are incredibly draining and painful at times ,but I feel they give me reasons to keep strong during my illness and all the setbacks that come with it;

Family and Friends - My immediate family visit my house every Saturday and we spend the afternoon together. Visiting distant family has become more difficult for us because of my pain levels, so we try to limit the time I would spend travelling to them with them visiting me when possible instead. I often get to see my god daughter every Saturday too, which makes me forget my pain for a minute or two. My friends also pop in to see me once a month at different intervals, for a catch up. This is a great form of keeping my spirits up.

Writing - This doesn't always give me instant happiness, yet when I get feedback from my blog it makes this worthwhile. To know someone may be feeling the same or is in a similar situation to myself has helped me in my own journey and makes me feel relieved. Writing has also recently played a huge part in acceptance towards my illness. Through forcing myself to put this personal account of awareness in the form of an online blog, I hope to try and help others. I also hope that in turn, they will feel less alone in their own encounter with illness.

Concerts - Whilst I have not always had similar hobbies to my friends, music connects the world. I really enjoy watching visual concerts of my favourite artists. The first concert I attended was when I was merely four years old. It was a Spice Girls concert at Wembley Stadium and since then, music has always been something I find comfort within.

Education - I am someone who likes to feel like they are working towards a goal and achieving in a challenging way. In chronic illness, this is something that doesn't happen often. I am guilty of lacking to give myself credit for the small things I manage. Because of illness, it's obviously hard to know whether you are able to hold down and commit to a job. However, there are many forms of education to divulge into. Illness does not necessarily eliminate this from your equation. I have enjoyed studying a new field, completing a distance learning course and being able to keep my mind active. It's nice to feel like you can achieve academics from bed too! I hope to gain my qualifications and eventually in time, a degree whilst housebound.